Well, today didn’t go as badly as it could have gone, for sure. I woke up feeling pretty poorly. It doesn’t matter how much I make the effort. The fact of the matter is, at this point in time, if I have to be exert myself to my physical limits for multiple days in a row, my POTS catches up with me, and there’s no amount of salt, sleep, or blood pressure increasers that will make me instantly well. There just isn’t. I have to keep doing all the good things that help the POTS, but I also have to listen to my body and relax when it’s time to relax. That’s how I get better.
This morning I work up and I was feeling incredibly nauseous. I asked Master Pravus if he could bring some pretzels or something upstairs for me, because the shower was upstairs and I knew that I could not go down the stairs and back up the stairs again twice without eating.
Master Pravus got me some food, and I got into the shower, but he also told me while he was down there Mom had this confrontational conversation with him where she was asking him things like:
“Why is she like this?” “What’s wrong?” “What can they do for her?” “Is she just nervous?” “If she ate more meat would this go away?” “How can she live like this?” And on, and on. No matter how many times we have explained that this was a genetic condition and that my condition could improve and stabilize, but it will never, ever disappear; she just didn’t get it. It’s frustrating because she keeps second guessing every symptom I have.
On the other hand, I also know she means well and doesn’t want me to be miserable, which is a nice sentiment, I suppose. It’s just that I wish she would listen to me and accept things though, because it’s hard enough for me day to day without constantly having to explain myself.
On a lighter note, I wore my kitty pajamas, and everyone loved them, but they made Dad laugh so much! He loved the tail. Ha ha. =^^= The morning was hectic with Mom waking everyone up really early (for no good reason, because the wedding wasn’t until late in the day and no one in the house takes that long to get ready), and stressing everyone out with constant yammerings. Joy.
Eventually, we got on the road, and we did arrive relatively quickly to the place we needed to be. We were there over a half hour early and there were already some people there. Percy was in a far better mood that day, which was nice, and I was very pleased to get a big hug and kiss. He really seemed happy we were there which was a nice change, I guess he was just really stressed the day before. As I mentioned in the other post, he really isn’t the type to like being the center of attention either, so I know that was stressing him out a bit. He did look handsome though! =^^=
One thing which I was somewhat worried about was that we were going to bump into relatives who we had not seem in over eight years. I was worried because I didn’t want anyone to make a big deal out of me being in a wheelchair, and I was worried it would come up a lot. It did come up a lot, but thankfully people only asked me out of the way of crowds, and they didn’t make a big deal about it in general, so I was happy. Actually, seeing those relatives was really nice. We caught up with each other a bit and exchanged emails and phone numbers. I am not sure whether or not we will keep in contact, but I would like to so we will see where it goes. Fingers crossed.
The ceremony itself was nice. I mean, I think it was nice. I was in a front row seat and I could not see anything because I was on the side (due to the chair), and all the groomsmen were in front of me. Still, it sounded nice, and Master Pravus got lots of pictures. The bride was beautiful and Percy was handsome. They were both smiling, and the bride even had to try not to cry a couple times. Cute.
After the ceremony itself, we went away to mingle with guests. Not being in the wedding party, we didn’t think we needed to stick around I guess, and no one had warned us ahead of time to. I had started eating a couple of tomatoes when someone came and fetched me and Master Pravus to tell us we were needed for photos. Shrugs. We hustled back to the area the ceremony was in, and we took a couple of pictures. Master Pravus wheeled the chair over, and I stood for three or four shots (which were very quick), and then I sat back down and watched the rest of the pictures get taken. There was special food and champagne in that section that the wedding party got to eat, so we didn’t starve while waiting, which was nice.
We mingled for maybe an hour or an hour and a half before they seated us. We watched the traditional things going on, first dance, cake cutting, etc. We ate our salads and dinners. Mom wasn’t watching Dad, and at some point, he got out of her sight and ate one of the cupcakes from the wedding cake arrangement (it was a cupcake tree) before he was supposed to. She had a conniption, and just started to scream at him. Everyone tells me: “Faete, you don’t live her life, you don’t understand. You would get frustrated too.”
You know something? No. No I wouldn’t. I have worked with children, and I have worked as a PCA for the elderly, and you want to know what? I have never, ever yelled at someone who simply did not understand what they were doing is wrong. Do you want to know why? Because that is ineffective, and it’s a waste of time for both you and the person who did the wrong action. Dad didn’t understand. Screaming at him (in front of tons of people, too) does not make him understand. I know that I am lucky to have the kind of patience that I have, but Mom literally makes zero effort with Dad. I mean, from morning until night all she does is yell “NO!” at the man at the top of her lungs. She doesn’t gently or carefully try to explain anything. The only reason I am even bothered is that when Master Pravus and me are home, and we explain ourselves to him and what we need or want him to do, he will understand about 80% of the time. Yes, the rest of the time can be frustrating, but honestly – if you can’t be bothered to make any kind of effort with someone, then why are you surprised when they continue to do things which bother or upset you? /Rant
Since we heard about the wedding, I have been working on my brother to get him to do the chicken dance and the hokey pokey at his wedding. He said that he absolutely would not allow it. Knowing that I am his sister, I teased him gently about it all year:
“Oh, you’re really going to have a wedding, and not do the Hokey Pokey??”
“Yes. Yes, I am.”
Whatevs. I am the sister of the groom, and I will do what I can to gently tease and poke fun at him.. And possibly get the chance to dance too! Ha ha. Actually, I was working on dance moves a couple months ago with Master Pravus, but now that I can’t really dance, those had to go on hold. Phooey I say! Phooey! We were the first two people that the bride and groom came over to see after the first dance, as they were making their rounds, and they said all the usual “So glad you could make it’s, and “You look so beautiful’s. I teasing prodded my brother again:
“Are you sure that we flew all the way out here, to Boston, to not get to do the chicken dance??”
“Why can’t you do the chicken dance?”
“Because I was told Percy wouldn’t allow it.”
Percy and Bride talk, but don’t tell me anything about it one way or the other. After a long while, Master Pravus wheeled me over to my brother to get a hug “from his same height.” (After all, he was almost finished eating his dinner, so he did have a chance to sit down, which was good.) I went over there and we were talking about the cupcakes. I do not honestly remember how the chicken dance came up, but Percy asked me:
“Do you want to do the chicken dance?”
“Do you want to do the chicken dance?”
“Then go over there and request it!”
“He won’t believe me, you said NO line or party songs!”
“Do you want to have fun tonight?”
“DO YOU WANT TO HAVE FUN TONIGHT??”
“Then go request it!!”
So, we go over the the DJ, and I explain that I am, in fact, the sister of the groom, and that I would, in fact, like him to play the chicken dance.
“…I was told distinctly that I was not to play the chicken dance.”
“Yes, I know, but I was told to come over here, explain that I am sister of the groom, and to explain that the groom is OK with it.”
We went back and fourth because the poor guy didn’t want to get in trouble, and honestly thought I was trying to get him into trouble.
“You want me to go and get my brother, so he can tell you he is OK with it himself?”
“Don’t bother him on his wedding day with something as trivial as that!”
“I am his sister! I will bother him with things as trivial as I like!”
And, seeing as how the DJ wasn’t going to believe me, I went back to my brother, and explained that the DJ did not, in fact, believe me, and that I needed him to go and help me out. I actually watched him (verbally) duke it out with the DJ and explain that he should play the chicken dance. A few songs went by, and then the DJ specifically called up the “Sister of the groom” and anyone else who was a child at heart. <3
And that is the very long winded explanation as to how I managed to dance the chicken dance at my brother’s wedding. Ha ha. I had a blast in my wheelchair, with Master Pravus spinning me in circles during the “Do-si-do” parts. <3
Oddly enough, after that, Percy had a talk with the DJ to tell him that any song that anyone requested he would have to play, and you wanna know what else?? Almost half the songs played were line dances or “party songs”. Go team me. At least I managed to inject some fun into that boring-as-fuck wedding you all.
I also managed to dance the Hokey Pokey, and the YMCA later on, which was also nice. (I didn’t request them, though!)
I mingled. I chatted. I saw people I had not seen or heard from in years. I talked to a few people who made my blood boil by saying things about Dad. Seems a few people are of the opinion that taking Dad’s esophagus out is a bad idea, because (and I quote) “He already suffers enough with his Aphasia, it is better to just let him die than to let him go through surgery or cancer treatments.” I am so angry at everyone with this opinion. I mean, they all tell me that since I live in Colorado I just don’t understand what it is like, but I do.
Whenever I come out to visit him, I see how things are going. I am not saying his life is perfect, but letting a person die purely because they cannot speak is ludicrous to me. All I can do is wait until he has his ultrasound and see what Mom decides to do. I do not want to attend a funeral. Especially not soon, and especially not one that could be prevented with surgery. (And that, is really a rant for another day anyway).
I drank a bit at the wedding. I had a champagne and three sex on the beaches. I “danced”. I really enjoyed seeing most of the people I saw. I went out front a couple times to smoke my e-cig with Master Pravus, and to hang out with the smokers. You couldn’t really carry on a conversation indoors (incredibly loud) so I always like to be able to go out where the smokers are, and the conversation is going.
Some of the people on the dance floor could really cut a rug!
The party broke up shortly after eleven. We were starting to get tired and had about an hour drive back. No biggie. Now, we’re settling in for bed and tomorrow we see Master Pravus’ Mom. Looking forward to getting away from the drama for a day and seeing how things go.